אבחון ואבחון: רטינובלסטומה
Last year, something happened to our family here in the Philippines that tested not only our physical and emotional strength but even our faith in Almighty God. On October 13, 2017, our world as we knew it suddenly stopped. That was the day we were told that Maggie, our daughter, and our only child, had a very rare form of cancer, Retinoblastoma.
Our first hint that something could be wrong with Maggie’s eye came from my father-in-law. He noticed what he called “a shiny reflection” in her left eye.
Once it was pointed out, my wife, Arra, and I also noticed this strange glow. At first, we were not concerned, as it was very subtle. However the more we noticed this glow in her one eye the more concerned we became. Since we did not see this same reflection in her right eye, we started to question if this was normal. Concerned that this glow may be a sign of something more, my wife searched the internet. She was very frightened when she discovered that a glow in the retina could be a sign of a rare form of cancer called Retinoblastoma.
We knew then that we needed to seek help and consulted an ophthalmologist. As soon as the doctor performed a thorough check up on Maggie we were told the heart shattering news. She said, “I hope I’m wrong, but what I can see in her left eye looks to be Retinoblastoma, a cancer of the retina.” With these words, everything just went blank in my mind. The only thing I can remember was kissing my daughter’s head and embracing her tightly. Once home and alone with my wife, we both broke down in tears, shaking and holding each other. We were scared, we were unsure of what to do, but most of all we wondered why God chose our Maggie for this very rare disease.
Eager to start Maggie on a treatment plan, we took her to a pediatric ophthalmologist at Philippine Children’s Medical Center the very next day. He tested Maggie and confirmed the previous Retinoblastoma diagnosis. He ordered an MRI for Maggie to determine the extent of the cancer cells’ invasion. We were told that regardless of the results from the MRI, Maggie would need to have her left eye enucleated which we learned meant that it would need to be removed.
We wanted another opinion before enucleating her eye.
My sister told us about St. Luke’s Hospital and the good reputation it has for treating Retinoblastoma. I immediately contacted St. Luke’s and scheduled an appointment with their pediatric ophthalmologist. Maggie was once again examined. We were told that there was a chance they could save her left eye. They needed to see the results of her MRI to make the determination.
Unfortunately the process of getting an MRI was not easy. We had to travel to several different locations before we were able to have the pediatric clearance she needed for the procedure. After a few days, we were finally able to have the MRI done. It took a few days still after the procedure until we received the results. It was an agonizing wait. Once we finally met with the doctor, we were told that, there was, in fact, a chance that Maggie’s left eye could be saved. He sent us to his colleague at the Eye Referral Center.
Our hopes were high! We wanted so much to save Maggie’s eye! However, these hopes were soon shattered. Once we met with the doctor at the Eye Referral Center he told us that based on what he had seen, the tumor was already occupying a significant area inside her eye. It was a few times larger than what laser therapy and cryo (freeze) therapy could handle.
He did not want to give the tumor time to grow outside of the eye socket and possibly into the brain. His suggestion was the immediate removal of the left eye and then to test the right for any signs of disease.
At that moment, I knew I needed to be strong for my wife and for Maggie. I realized this would be a decision that would change our lives forever. I quickly realized that being faced with the possibility of losing my child, giving up her eye was an easy decision. We gave permission for the surgery.
Maggie was admitted at Manila Doctors Hospital. The ophthalmologist said that he would do one final assessment in the operating room to confirm that the removal of her eye was necessary. After about one hour, he called for us. He said that there was no doubt that the left eye needed to be removed. He then gave us some wonderful news…the right eye showed no signs of cancer!
The wait was long and agonizing. But after about two hours, the nurses said the procedure was complete and that I could see Maggie in the recovery room. I found Maggie resting in recovery and crawled up next to her and cuddled with her for hours.
Maggie slept through the night and to our surprise, she woke up asking for milk! All throughout the day, she was active, alert, and acting normal.
It was as if she never underwent a surgery at all! We were discharged from the hospital two days after her surgery. The best news came a week after we were home. The results from the histopathology test had come back. The tumor was well confined inside the eye, all the cancer cells were removed during surgery. Maggie’s pediatric oncologist later confirmed that she would not need chemotherapy. Maggie was cancer free!
Maggie is compensating very well with the loss of her eye. She plays and interacts with others just as any other toddler. We are very hopeful and optimistic about her future. We will do everything possible to care and provide for her. We are also determined to help families in the Philippines and around the world recognize the glow and other signs of Retinoblastoma. We are forever grateful to Maggie’s grandfather for pointing out this ever present sign of her disease that had gone unnoticed. We hope by sharing our story many others will now be able to identify the glow in those children so desperately in need of help.
Maggie, my wife, Arra, and I are very thankful for our family, friends, and loved ones who have offered their support, prayers and financial support. We are also very appreciative for the wonderful doctors and nurses who cared for our little girl and her most vulnerable time. But most of all, we thank God for never leaving our side. We are forever grateful.
Today Maggie is a strong, healthy and confident little girl.
It would be very difficult for anyone to know all that she has been through just by looking at her. We are amazed by her resilience. She will always be our beautiful little princess.